A hole in the heart, a hole in the family

A little dark haired girl is wearing purple sweatpants with matching sweatshirt. Her dad, wait that's my dad but much younger, so the little girl must be me, is holding her hand as they walk through some sliding electric doors into the dim light of a corridor with an information desk and waiting rooms off to the side.

Why would this be my first memory?

I was not quite two years old. It was September of 1986 so I was 22 months old. The only reason why I know this is because that's when my brother died. Those doors opened to the hospital where my mother learned that her 38 week gestation baby was dead and that even though labor had started, she would be birthing a stillborn. Somehow, I picked up on the emotions of my loved ones and knew something was very wrong and that memory stuck.

Later my mom told me that her loss was so great that her desire to live only remained because of me.

Growing up, the explanation for why my brother died was unclear. As a teenager, I learned that he had a heart defect that, obviously, was not compatible with life. I heard different things: he had a hole in his heart, one of his arteries was not connected correctly and his heart formed inside out.

I didn't know that when I was 10, my dad had requested the medical records as well as the autopsy report. I also didn't know that I would find those records when I was cleaning out my mother's garage this summer.

Cause of death: Complete transposition of the aorta and pulmonary arteries.

Of course, I didn't know much about what that meant so I set out to learn.

I learned this defect is most commonly called Transposition of the Great Arteries or vessels. What is means is:

Babies with TGA have two separate circuits -- one that circulates oxygen-poor (blue) blood from the body back to the body, and another that recirculates oxygen-rich (red) blood from the lungs back to the lungs. Without an additional heart defect that allows mixing of oxygen-poor (blue) and oxygen-rich (red) blood, such as an atrial or ventricular septal defect, infants with TGA will have oxygen-poor (blue) blood circulating through the body, a situation that is critical. Even with an additional defect present that allows mixing, babies with transposition of the great arteries may not have enough oxygen in the bloodstream to meet the body's demands.(1)

The first question I had after obtaining that information was how did he even live as long as he did. This diagram illustrates how there is some mixing of blood in the atria (upper segments of the heart).



I also learned that in most cases TGA is not determined until after the baby is born and they are blue and floppy without pinking up over time and with treatment. This was a surprise to me because here I am learning that most babies survive birth with this condition and my brother did not.

It can be corrected early with surgery and most babies with the condition survive and unfortunately our family didn't get that opportunity. I perhaps more so than other young children have felt his loss because with his death I became and remained an only child. I often felt the hole in our family from not having a sibling and knowing that we came so close and suffered such a devastating loss that made it so.

I've also wondered if my parents could have known prenatally that the baby had a defect that was life threatening. My mom had told me after I became a mother that she had not had an ultrasound with my brother's pregnancy because it hadn't seemed warranted. In 1986, it hadn't yet become standard practice to conduct the 20 week anatomy check.

Could a routine mid-pregnancy ultrasound have caught it?

This question of routine ultrasound is still be discussed hotly in the scientific literature, as well as among expectant parents. Each couple or mother has to come to that decision for her/themselves and it will often be based on the values and perception of risk for the individuals.

My mom given her knowledge at the time decided to avoid a sonogram during that pregnancy, and none of the doctors pushed for it. Its not like now where its the exception to forgo the 20 week anatomy scan. Its within a family rights to choose one or the other. I've had to consider it myself and working through this experience gives me some more insights into the decision making process.

From what I've been able to learn about TGA, early ultrasound can detect it (2). A study using ultrasound to detect TGA prenatally started in 1986 and out of 68 fetuses with suspected TGA, 57 truly did (3). That's a pretty good detection rate. And according to the authors, mortality rates were lower when it could be anticipated before birth. They caution however that the technician must be adequately trained to detect fetal heart anomalies and the emotional upheaval of knowing ought to be weighed against nature taking its course.

I am now picturing the high-risk hell that my mother may have experienced in knowing early that my brother had this defect. Maybe it would have been discovered at 20 weeks and biweekly biophysicial profiles and non-stress tests would have been conducted to give him time to mature but then to end his gestation at the first sign of distress. If he died in utero between 32-34 weeks, that is a really early premature baby and in his case, one in acute need of open heart surgery to repair the defect.

A high chance of death anyway, a long NICU stay, recovery from a repeat c-section with a toddler at home, emotional trauma from the fear and horror of parenting a sick premie, the stress of the hospital bills--that could have been my family's alternate reality.

I've spent enough time at Solace for Mothers to know the pain, suffering and difficulty that comes from a birth experience like that. Knowing myself the trauma that comes from a negative birth experience, I can't choose which I would prefer. I know, from observation and from my own loss, the grief that comes from the loss of a stillborn baby. Would I choose that because its familiar? Because I recognize that the laws of nature are a crapshoot and sometimes babies die? That maybe facing his loss the way it happened was going to somehow be better than losing him after the trauma of a premature birth? The chance that my mother herself could have died given the increased risk of maternity mortality for cesareans over vaginal birth?

Of course, a question I've asked myself is what was the cause of the defect.

I've blogged before about the possibility that my mom's previous c-section could have contributed to my brother's stillbirth, though I have not found any evidence suggesting that a prior c-section can predict a congenital heart defect. Environmental contaminants have been named as a possible explanation (4)(5). In talking with my mother, I learned that she remembers smelling the solvents in the inks used in her workplace during her pregnancy with my brother. I already found the work of organizations like Environmental Working Group and Pesticide Action Network compelling but this further adds to my awareness of the effects of environmental contaminants. Not only do I find their ubiquity insidious but I am angered at the cover-ups employed to deny the facts and the lack of regulation and ethics that have caused so much damage already that the public is only beginning to learn about now.

I have to remind myself though, "Most of the time this heart defect occurs sporadically (by chance), with no clear reason for its development" (6).

And of course, nothing changes the reality. My mother continues to cling to me for her hope and happiness and I'm learning what being a sibling is like through watching my children. Comfort is found in the plan of salvation as taught by the LDS Church that my brother belongs to our family for eternity and that I will have the opportunity to know him in the next life. I already sense that my father, upon his death, was welcomed to the spirit world by his son.


(1) Children's Hospital Boston "Transposition of the Great Arteries"
(2) Role of Ultrasonography in Early Gestation in the Diagnosis of Congenital Heart... Abu-Rustum et al. J Ultrasound Med.2010; 29: 817-821
(3) Detection of Transposition of the Great Arteries in Fetuses
Reduces Neonatal Morbidity and Mortality in the journal Circulation 1999;99;916-918
(4) Having Faith: An Ecologist's Journey to Motherhood by Sandra Steingraber
(5) The Body Toxic by Nena Baker
(6) Children's Hospital Boston "Transposition of the Great Arteries"

Just responded to a CEO

Amy Romano at Science and Sensibility pointed me in the direction of a blog post written by the CEO of the hospital where a C-section was televised on the Today show, earlier this week.

Here's the clip of the video:

Visit msnbc.com for breaking news, world news, and news about the economy

Amy's response turned post and a link to CEO Paul Levy's blog

In response to Amy's post and others written by members of the birth community, Levy responded:

I understand many of the points that people have raised here regarding the rate of c-sections. That will be addressed over time.

But I have to admit to some concern that people here and at Amy's site are making judgments about this particular patient and her physician's advice. That, in my mind, is just not right. You cannot know all of the details involved in this case, and it is simply wrong to raise doubts like that about it.

Perhaps you think that the patient's decision to have the procedure on TV gives you the right to comment on her medical choices, but I would ask you to display some kindness and to consider the possible effects of your comments on the family.

My response:

At no point has a poster disparaged the mother who participated in the TV segment for her medical choices. The critiques have been directed to the woman's primary obstetrician and the one who performed the surgery (be they the same person or not). There was no indication in the segment that this was a maternal request c-section.

In all likelihood, the c-section that America saw was strongly recommended by the woman's OB who cited such misinformation like suspected macrosomia as an indication for cesarean, which it is not.

If one is to maintain that a woman's choices are being disparaged, then the only criticism that she can receive is that she trusted her doctor.

He still continues to maintain that posters comments and their "values and judgments about this topic could be interpreted as being critical of this specific doctor-patient decision."

On that he's right. I am critical of this specific doctor-patient decision, but not, like he is asserting, critical of the mother's decision. He seems to be equating the doctor patient relationship to the patient herself--like the patient assumes all responsibility for the unethical practices of her provider.

I think I feel a CODE MEC! coming on...

Northwest Taking Legal Action Against VBAC Bans

This was recently posted on ICAN, providing legal representation for women seeking Vaginal Births After Cesarean (VBAC), inspite of hospital policies in the Northwestern United States banning them.

I’m a lawyer with the Northwest Women’s Law Center in Seattle. I’m
investigating possible legal responses to bans on vaginal birth after
cesarean at hospitals in the northwest states - Alaska, Idaho, Montana,
Washington and Oregon. If you are currently pregnant and want to have a
VBAC, but are facing a hospital policy that would require you to have a
c-section regardless of whether you want it and whether it is medically
necessary, and are willing to consider working with a lawyer on this, we’d like to talk with you. Please email us at vbacbanhelp@ican-online.org Our services will be provided free of charge.

I believe this is a follow-up to the Seattle PI editorial from September 2008.

Consumer Reports Health Condemns Common Obstetric Practices

Consumer Reports Health is a new public service from the well-known Consumer Reports. They are now providing reporting data on medical procedures and treatments in an effort to assist consumers of health care to be more informed. I am impressed, and pleasantly surprised, that they are present the research-based evidence regarding obstetric practice, instead of what the American College of Obstetrics and Gynoecologists is promoting. This is what Consumer Reports Health have to say about basic obstetric practice:

Despite growing evidence of harm, many obstetricians and maternity hospitals still overuse high-tech procedures that can mean poorer outcomes for baby and Mom. Test your knowledge with our quiz below.

T/F: An obstetrician will deliver better maternity care, overall, than a midwife or family doctor.False. Studies show that the 8 percent to 9 percent of U.S. women who use midwives and the 6 to 7 percent who choose family physicians generally experienced just-as-good results as those who go to obstetricians. Those who used midwives also ended up with fewer technological interventions. For example, women who received midwifery care were less likely to experience induced labor, have their water broken for them, episiotomies, pain medications, intravenous fluids, and electronic fetal monitoring, and were more likely to give birth vaginally with no vacuum extraction or forceps, than similar women receiving medical care. Note that an obstetric specialist is best for the small proportion of women with serious health concerns.

Induced labor can halt fetal development.
True. The vital organs (including the brain and lungs) continue to develop beyond the 37th week of gestation. There is also a five-fold increase in the brain's white matter volume between 35 and 41 weeks after conception. Inducing labor (with synthetic oxytocin, for example) might stop this growth if the fetus is not fully developed. Between 1990 and 2005, the number of women whose labor was induced more than doubled.

Due-date estimates can be off by up to two weeks.
True. This inaccuracy can lead to a baby being delivered by induction or Caesarean section up to two weeks earlier than its estimated due-date, cutting off important weeks of fetal development.

"Breaking the waters" helps hasten labor.
False. There is no evidence to support the fact that this common practice (about 47% of women) shortens labor, increases maternal satisfaction, or improves outcomes for newborns.

Induced labor increases the likelihood of Caesarean section in first-time mothers.
True. The cervix may not be ready for labor. Other effects of induced labor include an increased likelihood of an epidural, an assisted delivery with vacuum extraction or forceps, and extreme bleeding postpartum.

Once you've had a C-section, it's best to do it again.
False. Studies show that, as the number of a woman's previous C-sections increased, so did the likelihood of harmful conditions, including: trouble getting pregnant again, problems delivering the placenta (placenta accreta), longer hospital stays, intensive-care (ICU) admission, hysterectomy, and blood transfusion.

Labor itself can benefit a newborn's immunity.
True. When babies do not experience labor (if the mother has a C-section before entering into labor, for example), they fail to benefit from changes that help to clear fluid from their lungs. That clearance can protect against serious breathing problems outside the womb. Passage through the vagina might also increase the likelihood that the newborn's intestines will be colonized with "good" bacteria after the sterile womb environment.

Epidural anesthesia is a low-risk way to make labor easier.
False. Many women welcome the pain relief, but might not be well-informed about the increased risk of its side-effects, including lack of mobility, sedation, fever, longer pushing, and serious perineal tears.

Epidural anesthesia presents risks to newborns.
True. Babies whose mothers received epidurals during labor are at risk for rapid heart rate, hyperbilirubinemia (the presence of an excess of bilirubin in the blood), need for antibiotics, and poorer performance on newborn assessment tests.

Episiotomies reduce the risk of perineal tearing.
False. Evidence shows that routine use of episiotomy offers no benefits but rather increases women's risk of experiencing perineal injury, stitches, pain and tenderness, leaking stool or gas, and pain during sexual intercourse. Yet in 2005, 25 percent of women with vaginal births continued to experience this intervention. Episiotomy is one of several obstetric practices adopted into common usage before being adequately studied.

Source: "Evidence-Based Maternity Care: What It Is and What It Can Achieve," a detailed review of clinical evidence by Carol Sakala and Maureen P. Corry published by the Childbirth Connection, the Reforming States Group, and the Milbank Memorial Fund, October 2008.

Legal Rights to Informed Consent in Birth

This article from the Seattle PI "High rate of C-section births is health concern for women" was a breath of truth and reality of what women are facing with birth.

This is the first time, in a news media outlet, that I've seen hospital practices framed as coersive and trying to manipulate women's birthing choices. And the first time I've seen the abuses of the fields of obstretrics frames as a health issue, as well as a legal issue regarding reproductive rights and patient's rights.

One particularly persuasive quote from the article, says:

Such reasoning inappropriately views a pregnant woman's decision about her and her baby's needs as suspect, and it ignores her legal rights as a patient. All pregnant women, whether they view birth as a natural event only rarely needing medical intervention, or whether they willingly accept medical assistance with the birth process, have the legal right to informed consent and to direct the experience of bringing their children into the world.

The issue needs increased awareness. It goes beyond the talking point of VBACs and coerced Cesearans although those are grave concerns that need to be addressed. Please post comments to the PI article.

Hospital Practices Interfere with Breastfeeding

This kind of piggy backs on my earlier post about hospitals giving free formula samples to new mothers leaving the hospital postpartum.

Birth NETWORK has posted an article orginally published by the Center for Disease Control (CDC). It mentions the appropriate interventions that hospitals should employ to encourage breastfeeding for newborns born in hospitals. It also mentions obstetrical interventions during birth that interfere with breastfeeding. Those include the use of labor analgesics (pain medications like demoral, morphine, etc) epidural anesthesia, and cesarean birth.

The article also addresses the benefits of breastfeeding and why it should be encouraged, both for babies and mothers. It advocates extending breastfeeding through the first year as the benefits possibly include lower obesity rates in childhood and adolescence, and lower rates of childhood illness and infection.

These findings ought to make obsetricians and hospital staff to question the use of routine pain relief given to women in labor and prevent hospitals from lining their pocketbooks from formula companies intent to sell their product to women who ought to focussing their efforts on establishing a healthy and normal breastfeeding relationship. Trust me, women who need to formula feed their babies, know where to find it. It doesn't need to be sent home with them.

TRUST Birth Conference

A few months ago, I became acquainted with the Trust Birth Initiative. That initial interaction and Amy from Crunchy Domestic Goddess prompted me to start this blog (see my early entries). The current push of the Trust Birth Initiative is the Trust Birth Conference taking place in Southern California March 7-9. I would love to attend but family business and responsibilities is keeping me from being able to. But that's okay!

Because Carla Hartley, the founder of the Trust Birth Initiave, is making downloads available after the conference for those who were unable to attend.

I will be able to hear the presentations by Michel Odent, MD, Rixa Freese's presentation on portrayals of birth in media, Henci Goer, Sarah Buckley, Laura Shanley and Carla Hartley herself. Topics will include discussions on unassited birth, the technocatic version of birth, the research and the evidence of cesarean, midwifery managed births, homebirths, prenatal care, circumsision, the power of belief, intuition and touch during prenancy, birth and infancy. Can you tell? I am very excited that this option is available to me.

This is also a great option for those who do attend the Conference but couldn't see all the presentations that were of interest to you. Conferences are like that...you have to prioritze and plan which presentations are most important to you, while missing others presentations of interest happening simultaneously during each session.

What they don't tell you about CSections

In a recent Mothering Magazine article, the writer shares the following risks of C Section, which often are undisclosed to women when being told they need one.

1. A woman is five to seven times more likely to die from a cesarean delivery than from a vaginal delivery.

2. A woman having a repeat C-section is twice as likely to die during delivery.

3. Twice as many women require rehospitalization after a C-section than after a vaginal birth.

4. Having a C-section means higher rates of infertility, ectopic pregnancy, and potentially severe placental problems in future pregnancies.

5. Babies born after an elective cesarean delivery (i.e., when labor has not yet begun) are four times more likely to develop persistent pulmonary hypertension, a potentially life-threatening condition.

6. Between one and two babies of every hundred delivered by C-section will be accidentally cut during the surgery.

7. The US is tied for second-to-last place with Hungary, Malta, Poland, and Slovakia for neonatal mortality in the industrialized world.

8. Babies born via C-section are at high risk for not receiving the benefits of breastfeeding.

9. The risk of death to a newborn delivered by C-section to a low-risk woman is 1.77 deaths to 1,000 live births. The risk of death to a newborn delivered vaginally to a low-risk woman is only 0.62 per 1,000 live births.

See full article here.

Another finding that greatly disturbed me since it affected me personally is that women are more likely to experience ectopic pregnancies or spontaneous abortions in subsequent pregnancies after a C Section. Women who previously had a C-section are more likely to have a stillborn child in subsequent pregnancies.

That finidng cuts me to the quick because I was born a C-Section baby (not medically necessary, breech presentation) and my mother's next pregnancy, my little brother, ended in a stillbirth. I don't feel guilt, persay, for being a C-section baby. Its not my fault that the US maternity care system in 1984 (and now) doesn't know how to birth breech babies, and it wasn't my fault that my mother wasn't more informed. But I feel hurt and in some way that my birth was tarnished and my only sibling lost because of something that involved me. Learning that finding brought the grief of knowing that I had a little brother and lost him back into my mind and more painful now that I know what having a child is all about.

I grieve for my mother all over again that she had to deal with the recovery from major abdominal surgery while adjusting to life with a newborn and then two years later face depression and grief when her second child died before being born.

I feel empathy for those women who regret the C-sections they've had or who had one and didn't want it, because those women shoulder the guilt, anger and sometimes trauma of that experience which is then compounded when their next birth and pregnancy does not yield a healthy baby.

They don't tell you that these things can happen (and more frequently do) when offering the consent form and schedulign for a C-section. Imagine what the C-section rate would be in this country if they did.